Who is Trina

Once upon a time, there was a girl. She lived in a small town and had big town dreams.

All through school, she worked hard to earn excellent grades, volunteered in her community, and earned academic scholarships to go to college.

She married her high school sweet heart, and with their combined talents, skills, and abilities, they looked forward to a bright future where they could not only provide for themselves, but be a blessing to others and strong leaders in their community.

Before

Before having a son with Type 1 Diabetes, she worked full time teaching right out of college, had model classrooms in Oregon and Arizona, and was the ELL lead teacher and coordinator for the Payson Unified School District.

She resigned so that she could spend more time with her little boy and give him all of the educational opportunities that she worked so hard to build for other students.

Because of her specialized training and over 10 years teaching experience, she started her own educational consulting and training business to help teachers with best teaching practices around the state.

She also was influential and recruited for task forces to help the state department with educational program development for Structured English Immersion Programs.

After one year of being home, helping her husband grow their photography business and still working part time doing educational consulting, training and subbing, she took a full time on-line teaching position, to help her family continue to maintain the health insurance and benefits they always had.

She loved spending time with her family, helping others, and being involved in their community.

The Day Our World Stopped

The last day that we really had help watching Wyatt full time so that we could work or spend any time together as a couple, was on the day Wyatt got sick. We were working together at a school photo shoot and my cousin had taken him to pre-school.

When she picked him up, she said the teacher told her he just seemed tired and not really like himself. By the time we returned from work that evening, my cousin said she thought Wyatt seemed like he was getting sick, and that he had started breathing heavily. I thought maybe he was coming down with bronchitis, but he just didn’t seem right.

I slept on the floor in his room that night to look after him, because he was up peeing a lot all night and just seemed really tired.

The next morning, I had a lot of conference calls for work, and we wanted to see if Wyatt started improving or getting worse. We thought it might be a cold coming on, but didn’t want him to have to wait all weekend for antibiotics if it was.

When he started slumping over in the recliner and continued to breathe heavy, I called and cancelled the rest of my calls for the day, called our doctor, and although he was off, he wanted to meet us at his office to see Wyatt personally.

After a quick examination, he was almost positive Wyatt had Type 1 Diabetes, and prayed with us before sending us over to the ER.

The Hospital

I rode with Wyatt in the ambulance to Phoenix Children’s Hospital, not wanting to believe that he had Type 1 Diabetes. Watching my little boy go unconscious and being told he was going into a diabetic coma ripped my heart out.

I kept thinking they missed something, or wanted them to check him for something else. How could my little boy’s body suddenly stop producing insulin?

The next four days were agonizing, exhausting and overwhelming. While most of the nurses and doctor’s were amazing, I just didn’t want to be there, in this situation, and was, for the first time in my life, mad at God.

I had one cousin who had Type 1 Diabetes since he was in high school, and he said he wouldn’t wish that life on anyone and was praying that’s not what Wyatt had.

In the PICU, I had wished I could have information on what was happening, or a way to explain to my son why he was being held down and given insulin shots in his stomach. I couldn’t imagine that this terrified, screaming little boy would have to do this every day for the rest of his life now.

Slowly, he came back to recognizing me and didn’t want me to leave his side. I stayed with him for all but one shower over the next four days and worked to be trained so we could take him home. The weekend was especially difficult because none of the regular care staff were there, and by Monday, we just wanted to take our child and get him home.

I’m sure the staff is wonderful, but they deal with this everyday, and sometimes their compassion and hearts forget that for new families being diagnosed, this is terribly overwhelming and upsetting to swallow.

Learning the Ropes

I remember thanking God, while in the hospital with Wyatt, that I wasn’t pregnant again. Although we’d been trying, several miscarriages later, and now with my son with a chronic illness, I was just very thankful to still have my son and my plate could not handle any thing else.

Of course, I thought stress made me miss for the next few months, but a pregnancy test in December showed otherwise. God knew better and had another plan.

During Wyatt’s first year with Type 1 Diabetes, we were blessed with his Make a Wish Trip, selling our rural home and moving into town close to the hospital, and had our baby girl.

Our family and friends donated to help us bank her cord blood, because we heard that someday maybe that could be used to help cure Wyatt.

I naively thought I could continue teaching full time, but after my second cesarean with our daughter, and realizing that my energy wasn’t going to return working full time teaching and at the studio all day and finishing my on-line teaching tasks all night, while nursing and checking Wyatt’s blood sugars every three hours, it was only a matter of time before my body gave out.

In March, I was starting to have difficulty with carpel tunnel from all of the data entry tasks at my online teaching job, and was physically, emotionally, and mentally exhausted from working full time while caring for our children.

I would have to have my children crying in their rooms while I did my online conference calls, was missing Wyatt’s meals and shots because of online meetings and when I almost gave my baby girl my SON’S insulin shot, I decided I just couldn’t do it anymore.

The hardest decision I ever had to make was to quit my full time job with health insurance, WHILE having an insulin dependent son with costly medical expenses.

I prayed and prayed about my decision, but we knew that was the only way I could take better care of Wyatt and help my husband with our business. Especially because we now have nobody to help care for him because of his medical needs, and are not able to have him in traditional public school because of the lack of quality care and exposure to illnesses.

I decided to “Let go, and let God” and have been holding on to faith to guide our decisions and family, while working hard to do everything I can to provide for them.

Our New . . . Life?

I can honestly say I had been living in depression and just trying to get through each day, one shot at a time, since Wyatt was diagnosed with Type 1 Diabetes in November of 2008.

Being surrounded by people that love us, but just cannot relate to what we are going though, or who don’t want to accept it and just live like everything is okay, is very difficult.

The fact is, everything is not okay.

This is a life changing event that affected all of us, and continues to affect us every day.

The huge part that is changing for me though is my attitude about it, acceptance of it, and realization that this is not something we can just do every day, on our own, and without further help, assistance, and better medical training.

This past summer of 2010, Wyatt’s Great Grandma Alma sent us to a Type 1 Diabetes Family Camp that changed and save our lives, in so many ways. For the first time since Wyatt was diagnosed, we were surrounded by other families that also had children with Type 1 Diabetes.

Wyatt had never played with another child with Type 1 or watched anyone else get shots of insulin for their food. The fact that he saw he wasn’t alone and that we, as parents, weren’t alone anymore, lit a spark inside of us that had almost disappeared.

We didn’t understand why we didn’t have the extra energy we used to, why we were exhausted all the time, and why we couldn’t fix this.

The Diabetic Youth Foundation and the Juvenile Diabetes Research Foundation are two model foundations that we are going to work to support, be involved with, and create another foundation to help children and families who fall through the cracks and need medical assistance to care for their children with these long term issues.

Today

I work harder than I’ve ever worked, every day, because not only am I working to provide for my family financially, I have the huge responsibility of trying to be an artificial pancreas for my son, checking his blood sugars routinely and calculating all of his meals, while trying to estimate and calculate the appropriate insulin dose.

I don’t sleep well anymore. Getting up every three hours to check his blood sugar or having him wake me up in the night when his legs cramp has put a fear in my heart I’ve never realized before.

Will my son make it through the night? What happens if I’m too tired and can’t get up to check him?

One of my worst fears was realized when my body couldn’t wake up this summer to check him one night and he ended up having a sustained low which resulted in a terrifying and paralyzing seizure for 6 hours.

I never thought my own son wouldn’t recognize me, let alone twice in two years from medical complications.

I’m not saying, “Why me?” I’m just praying for strength, support, and the courage and ability to change our situation to take the best care of my son possible.

The Future?

Having our son get Type 1 Diabetes has made us realize that there is a major gap in the system. Hard working families that are making their payments, have great credit, have always been able to help others and who want to make a difference in people’s lives, cannot sustain when they have had a major life changing event that, with or without insurance, is financially, emotionally, and physically devastating.

We were able to get Wyatt into a study at Stanford that will result in two studies and hopefully help not only our son, but other children, and families in this situation.

I also know that God wants to make best use of our talents, abilities, and skills and wants us to be a blessing to others. I am going to embrace this new life and work to “Thrive, Not Just Survive” with Type 1 Diabetes.

It is on my heart to start a foundation for other children and families in this situation, and we are having family and friends who want to help and donate to Wyatt’s cause by helping him get the care he needs, by being in this study over the next year.

I know it is important to share our story and to put a face with Type 1 Diabetes. Every person’s situation with this is different and while it’s not easy for anyone, I think it’s especially difficult for young children who don’t understand why they can’t eat, play, and go to school, like other kids.

Right now, home schooling my son is the best option I have for helping him have healthy blood sugar control and limiting his exposure to sickness, which could result in him being back in the hospital. He has been sick several times since he was diagnosed, and having to give him shots every 3 hours to keep his blood sugar down and keep him out of the hospital makes caring for a sick child, even more difficult that it normally is.

I want to be an example and positive help to others who want to live a full life with Type 1 Diabetes, and let them know they are not alone. All things are possible with God, hard work, and the love support and prayers of your friends and family.

But, we know it’s also very expensive and constant and so I’m not giving up until I create a way to help others in this situation. God bless you and thank you for having a heart for families living with Type 1.

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